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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Waiting for diagnosis—how to cope w/ early satiety?


01-10-2016, 10:58 AM   #1
Adadzio
 
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Waiting for diagnosis—how to cope w/ early satiety?

Hi everyone, I originally posted in the support group but I figured a new thread might be a better idea. I am so relieved to see this forum and know that I'm not alone, after a year of googling my symptoms and feeling utterly crazy…Can't believe how tricky GI diagnoses are, for us all to be in the same boat.

A bit about me—I'm a 21 y/o female college student. A year and a half ago while living in southeast Asia I developed stomach pain. I called it "pain," what it really was was fullness/pressure that I'd never experienced in my life and began to notice lack of appetite. I've always had bloating and pain and diarrhea after eating, since I was a little girl, but assumed it's because I'm lactose intolerant/sensitive stomach and never really thought much about it. That was in fall 2014. Moved back home that winter.

Flash forward spring 2015. Stomach pain worsens and I start to notice fatigue. That is normal I figure, I have anemia and low blood pressure and I'm a stressed university student, right? So I don't think much of it. That summer 2015 the pain is becoming unbearable and my appetite starts to dwindle even more. I finally drag myself to GP because my partner is yelling at me that I have parasites from Asia. Fine. So they put me on a scale at the doctor and it says 123 lbs. I was surprised, having been 135 or so the month before! But again, thought little of it, assumed I was simply eating better and this was a healthy kind of weight loss.
My GP didn't think so. She ordered stool cultures, CBC, full ultrasounds (pelvic, abdominal) etc. All normal, of course. I come back in July 2015 (3 weeks later). I'm 118 lbs. She is alarmed, puts me on omeprazole and refers me to a GI, thinking I have stomach ulcers.

At this point, it's late summer and early fall 2015, I'm starting to get a little frustrated and skeptical. I'm kind of the opposite of a hypochondriac—I always think I can cure myself at home, that doctors are out to make money etc. So I throw that little referral in the back of my desk, choosing instead of focus on my studies.
But I'm not feeling better with the diet and med changes. I cut out dairy, alcohol, soda, carbonation, caffeine completely. It helps for a time, long enough that I can finish my fall semester. That was 3 months ago—October 2015. I finally dig that referral out and beg for the next GI appointment available with my insurance (I have horrible insurance…) They say I'm in luck to see one of the top GIs before the year ends (a bit of a drive, but worth it).

So I see him in November 2015. He's alarmed by my weight loss as well, puts me on carafate, and immediately sends me for thyroid and celiac panel+bloodwork and an upper GI series with small bowel follow-through. I'm really confused at this point, thinking he's nuts—it's my stomach, not my intestines, right?! Bloodwork comes back fine. I go in for the x-rays (that barium solution is hell!!) The tech finds nothing in stomach, to my frustration, then double takes at the screen during the small bowel follow-through. He pushes on lower right abdomen and asks "does that hurt?" Well, yeah, I told him. It always hurts. But I thought that was normal. He gives me a look and cleans me up.

Flash forward to early December—I'm traveling abroad to visit family, and symptoms are taking an absolute nosedive with severe fatigue. That's when I receive multiple calls from the GI office, telling me I urgently need to take a capsule endo before my next follow-up with GI. I check my x-ray results, though I have no idea what they mean:

"The distal ileal loops are distended and there is an increased number of folds demonstrated in the distal ileum. The terminal ileum is normal in appearance. Contrast reaches the colon by about 45 minutes.

IMPRESSION:
Distended distal ileal loops with increased number of folds. This finding can be seen in malabsorption syndromes such as celiac disease."


Well, as I said, I already tested negative for celiac, so that can't be it. At this point I finally start to believe that my GI knows what he's doing—with the x-ray they had finally found SOMETHING. I do some googling because my next follow-up isn't until new year. That's when I start to connect the dots, but I'm still a bit in denial at that point.

I go in for the pill cam before Christmas Eve 2015 and am disappointed, but not surprised, when that test GI finds everything "relatively normal." My main GI clarifies that this means nothing life-threatening, so now he can start to narrow down the diagnosis.

And that's when everything got 100x even worse. The past few weeks have been me crying in bed, low grade fevers, forcing myself to drink even 800 calories a day in smoothies, Ensure, gatorade, etc. That is by FAR my most severe symptom—what I now learned is called "early satiety." I often have this severe hunger pain, as if my body realizes it's starving…so I go to eat a bite of food, and then I cannot possibly eat anymore. At this point I finally put the last puzzle piece in and wonder if this could be IBD?

So finally the day arrives for my follow-up with the GI — Jan 8th 2016 (last Friday). I went in looking like death on legs and utterly desperate to get back to my normal life. I weighed in at 110 lbs (25 pound weight loss since late July). After reading some of your stories, I am so thankful I have a team who takes my symptoms seriously and seems committed to investigating the diagnosis, but I am still so frustrated that this has become my life!! GI prescribed me "IBS meds" (Levsin) but wasn't able to schedule my Colonoscopy/Endoscopy until late Feb.

So I have to live with this debilitating starvation and fatigue for 2 months, unless the IBS meds miraculously work. He admitted they probably won't—IBS doesn't cause weight loss as I've experienced. But he doesn't want to rush into more "harmful" treatment. I think I know what he means by that—some type of IBD meds. Steroids, Immunosuppressants etc. I understand the process, and am grateful for his caution. But I am so frustrated with my own body in the meanwhile!! I can barely function, let alone go to work and school, I've already drastically had to cut down my activities and my relationships are being affected by this stupid illness.

So, I guess that's the gist of my experience so far. If you have any tips or advice about the upcoming Colonoscopy/EGD, or how to eat in the meanwhile, I would so appreciate it. If nothing comes of those scopes, I don't know what I'll do, to be honest. I'm starting to get depressed about the whole thing. I just feel sick. Just…completely, utterly sick to the bone

Last edited by Adadzio; 01-10-2016 at 12:43 PM.
01-10-2016, 11:24 AM   #2
fuzzy butterfly
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Hi sorry you are here. Welcome all the same. ☺
Unfortunately it can be a long process to get a dx. In the mean while we have to bear with it 😠.
I hope you can get things sorted n under control quickly. Never be afraid of pushing for help if you need too. Sending hugs n support your way hun 💕💕
01-10-2016, 12:50 PM   #3
Adadzio
 
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Thank you…I appreciate it

If nothing comes of the scopes, I will definitely be pushing for some more bloodwork or an MRE. If anyone has any specific tests that could be helpful, please let me know!
01-10-2016, 01:19 PM   #4
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Your welcome. Have you had a fecal calprotectin test done yet. That can be very useful in a diagnosis of ibd. push for all you can or they will let you rot coz they think you cant be that bad uf your not making enough noise about it. ??? I know mad isnt it. Mri scan got me my diagnosis . Colonoscopy didnt as it was in my ileum. Pill cams are also good. Try for anything n everything you can . Hope it gets you some answers. 💕
01-10-2016, 01:23 PM   #5
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Your welcome. Have you had a fecal calprotectin test done yet. That can be very useful in a diagnosis of ibd. push for all you can or they will let you rot coz they think you cant be that bad uf your not making enough noise about it. ??? I know mad isnt it. Mri scan got me my diagnosis . Colonoscopy didnt as it was in my ileum. Pill cams are also good. Try for anything n everything you can . Hope it gets you some answers. 💕
01-10-2016, 01:23 PM   #6
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Opps sent it twice lol 😃
01-10-2016, 02:01 PM   #7
Adadzio
 
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Your welcome. Have you had a fecal calprotectin test done yet. That can be very useful in a diagnosis of ibd. push for all you can or they will let you rot coz they think you cant be that bad uf your not making enough noise about it. ??? I know mad isnt it. Mri scan got me my diagnosis . Colonoscopy didnt as it was in my ileum. Pill cams are also good. Try for anything n everything you can . Hope it gets you some answers. 💕
Yes, it's crazy how we have to push and push for doctors to listen to us…
I did have the pill cam and the doctor found nothing, which was incredibly frustrating, as it is supposed to show everything, right?!! But my main GI mentioned that they hadn't been actively looking for inflammation, so perhaps that is a factor? I'm not sure. I haven't had the fecal calprotectin test, but will bring it up if the scopes come up short. Thank you
01-10-2016, 02:11 PM   #8
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Welcome no probs. Oh well that says it all 'wernt looking for inflammation ' they should be looking at anything n everything to honest. But thats medics for you. Ye give fc test a mention it usualy shows up if you have inflammation with that. Fingers xd for you. 💕
01-10-2016, 07:53 PM   #9
ronroush7
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I agree with all that Mandy has said. Wishing you the best. I have Crohn's Disease and some of what you say makes me wonder if you have an obstruction. I am no expert. Let us know how you are.
01-10-2016, 09:27 PM   #10
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Ron maybe onto something with the obstruction one. Iv never had one so far,so not sure how it would affect someone. So ye mention it as a possibility. keep us updated please n best wishes 💕
01-10-2016, 10:26 PM   #11
Adadzio
 
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I agree with all that Mandy has said. Wishing you the best. I have Crohn's Disease and some of what you say makes me wonder if you have an obstruction. I am no expert. Let us know how you are.
I did wonder about an obstruction, but wouldn't the pill cam have caught it? Unless it's developed in the month since I had it. Crohn's is a tricky disease, after all…
Will keep it in mind.

Thanks to you both!
01-10-2016, 10:45 PM   #12
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Welcomr. Best to you.

01-12-2016, 04:28 AM   #13
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Hi and welcome to the forum , sorry you have to go through this. Did they do a ct? Barium enema might also help and a sonar. Let them run blood again and like mandy said fc test are very helpfull. Did they took a biopsi if not that might be a good idea
01-12-2016, 07:10 AM   #14
Adadzio
 
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Hi and welcome to the forum , sorry you have to go through this. Did they do a ct? Barium enema might also help and a sonar. Let them run blood again and like mandy said fc test are very helpfull. Did they took a biopsi if not that might be a good idea
No CT, MRE, barium enema, sonar, fc, or biopsies yet. Hoping the biopsies gets taken during my scopes. The good and bad news there is it seems I have plenty of testing I can still go through
01-12-2016, 08:26 AM   #15
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I am so sorry , maybe it could be worth asking your GI so they could find out whats wrong , i hope you get some anwers soon. I had every test you can think of took them one month and i were diagnosed :-) once they get to the point they can treat you and you could start feeling better. Im sending prayers and suppport your way
01-12-2016, 09:04 AM   #16
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Thanks a lot !! Yeah, I know my GI suspects IBD though he hasn't outright said Crohn's. I mentioned I have relatives with Crohn's so unfortunately he believes I might have the disposition for it. And he admitted my symptoms go beyond the scope of IBS. I do find the IBS meds help a little with lower stomach pain after eating, but I still have this terrible lack of appetite/fullness/discomfort that just never goes away. It's so weird, I honestly can't remember what it feels like to HAVE an appetite one day I just woke up with this stomach "fullness" and it never went away! Thankfully my GI is not stopping until I get answers because my weight is not stabilized and if this continues I'll be severely underweight. So, we'll see how it goes!
01-12-2016, 09:27 AM   #17
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Thanks a lot !! Yeah, I know my GI suspects IBD though he hasn't outright said Crohn's. I mentioned I have relatives with Crohn's so unfortunately he believes I might have the disposition for it. And he admitted my symptoms go beyond the scope of IBS. I do find the IBS meds help a little with lower stomach pain after eating, but I still have this terrible lack of appetite/fullness/discomfort that just never goes away. It's so weird, I honestly can't remember what it feels like to HAVE an appetite one day I just woke up with this stomach "fullness" and it never went away! Thankfully my GI is not stopping until I get answers because my weight is not stabilized and if this continues I'll be severely underweight. So, we'll see how it goes!
Hoping the best for you.

01-12-2016, 01:25 PM   #18
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Hi Adadzio it's good your doctor is going all out with the testing. Hope you get sorted out very soon. Best wishes 💜
01-14-2016, 10:06 AM   #19
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I can relate to your lack of appetite being "by FAR" your most severe symptom. During my initial flare of Crohns pancolitis, I (an average-sized middle-aged male) went from 165 to 105 pounds due to an extreme lack of appetite which I think would be better called a "negative appetite" since even the smell of food made me feel nauseous.

I think you are on the right track to try the liquid formulas. I found that I could tolerate to some extent salty soups such as chicken noodle and well-seasoned frozen dinners mostly of the chicken and rice type.

My extreme weight loss eventually reached the point that I became alarmed that I was going to end up in the hospital on a glucose infusion. That's when I had the idea to look on the internet to see if I could buy glucose. I found that glucose is known as dextrose in the food industry and the body-building supplement business and I bought some from Amazon.

I mixed the powdered glucose/dextrose in glasses of water which I slowly sipped throughout the day to avoid blood-glucose spikes. I was able to add 500 to 1000 extra calories a day to my otherwise starvation diet.

You could also try making a water solution with common sugar (sucrose) (glucose bonded to fructose), but when I tried this option it seemed to make my diarrhea worse, possibly due to what is known as "fructose malabsorption".

I was eventually diagnosed via colonoscopy and put on steroids/prednisone which (for someone who is starving) has the wonderful side effect of increasing one's appetite. After about a month on pred, it knocked out my Crohns inflammation, and my appetite returned and the combination of starvation and steroids resulted in the most wonderful psychedelic experience of the sensation of being hungry and enjoying the smell and flavor of food. Kind of like being blind and then being able to see again.

I hope you get a diagnosis from your scopes and biopsies, and a successful treatment, and get back the simple pleasure of having a strong appetite and enjoying food.
01-14-2016, 01:18 PM   #20
Adadzio
 
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I can relate to your lack of appetite being "by FAR" your most severe symptom. During my initial flare of Crohns pancolitis, I (an average-sized middle-aged male) went from 165 to 105 pounds due to an extreme lack of appetite which I think would be better called a "negative appetite" since even the smell of food made me feel nauseous.

I think you are on the right track to try the liquid formulas. I found that I could tolerate to some extent salty soups such as chicken noodle and well-seasoned frozen dinners mostly of the chicken and rice type.

My extreme weight loss eventually reached the point that I became alarmed that I was going to end up in the hospital on a glucose infusion. That's when I had the idea to look on the internet to see if I could buy glucose. I found that glucose is known as dextrose in the food industry and the body-building supplement business and I bought some from Amazon.

I mixed the powdered glucose/dextrose in glasses of water which I slowly sipped throughout the day to avoid blood-glucose spikes. I was able to add 500 to 1000 extra calories a day to my otherwise starvation diet.

You could also try making a water solution with common sugar (sucrose) (glucose bonded to fructose), but when I tried this option it seemed to make my diarrhea worse, possibly due to what is known as "fructose malabsorption".

I was eventually diagnosed via colonoscopy and put on steroids/prednisone which (for someone who is starving) has the wonderful side effect of increasing one's appetite. After about a month on pred, it knocked out my Crohns inflammation, and my appetite returned and the combination of starvation and steroids resulted in the most wonderful psychedelic experience of the sensation of being hungry and enjoying the smell and flavor of food. Kind of like being blind and then being able to see again.

I hope you get a diagnosis from your scopes and biopsies, and a successful treatment, and get back the simple pleasure of having a strong appetite and enjoying food.
Thanks so much, I really appreciate it. I will look into the glucose…I'm actually pretty certain I have the sucrose/fructose malabsorption like you…but glucose could definitely be an option. Hoping my scopes give me some answers and meds too…
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